Some “Gifts” From The CDC


Hello Luvs,

In writing to Sandra Cashman, MS, Executive Secretary to Office of Chief of Staff at the CDC, I inquired about the CDC guidelines. I wrote about the way that pain patients are being harmed. Telling them how many people including me, are being force tapered. I asked if the “Fentanyl patch” was truly illegal now; for anyone without non malignant cancer pain (as my pain Dr recently told me. He also told me that “I’m educated and should be able to find this info to corroborate what he’s telling me”)!

Below is the response that I received back from her, along with all of the “educational” materials that they sent to me. You may or may not be able to use any or some of this info that I’ve posted. But if it can help you in any way, feel free to copy & paste anything that may be helpful to you. ***PLEASE NOTE THAT THESE ARE NOT THE LAW. THESE ARE JUST THE GUIDELINES AND BROCHURES SENT FROM THE CDC (which may be or most likely is bias)…

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Another File along with the full CDC Guidelines are here for you:

1). https://www.dropbox.com/s/xqqcpgtd659ti23/Folder%202417475_Opioid%20Tapering%20Rules%20-%20Suzanne%20Stewart%20-%20CDC%20%20%20Guideline%20for%20Prescribing%20Opioids%20for%20Pain%20Management%202016.pdf?dl=0

2). https://www.dropbox.com/s/799ks1z3eam8ikr/Folder%202417475_Opioid%20Tapering%20Rules%20-%20Suzanne%20Stewart%20-%20%20%20Fentanyl.pdf?dl=0

Why I Resigned From USPF


Hello Luvs,

It is with sadness that I write this blog post today. I would never intentionally hurt anyone. Therefore, any part of the following letter, that could in any way divulge information which I’m not at liberty to share; I have put “X’s” in the place of the words I had written. But I wanted my followers/friends in the pain community to know that this was the most difficult thing that I’ve ever had to do. I loved doing this volunteer work for USPF. They always told me that we were a “family”. Yet, the very day that I lost my Long acting/Extended release pain medication, I opened an email that was just the opposite of everything I thought we stood for. Since that email, I have contemplated resigning, but did not want to “hurt” anyone or do anything to leave them without enough board members etc. But from that day on, things just went down hill. Next, I saw a trailer for a movie that stars actress Karen Duffy and our Interim CEO, called “Balancing the Pain Scale”, that I found out has been in production for 2-3 years. As a Board member, I knew nothing about this movie until someone else alerted me. I went to the trailer and was saddened when I saw the words get “beyond the pill bottle” as I was losing the one thing that had given me some semblance of a life; and so are so many of you.

Lastly, I must add that in the past, I was sent copies of kind emails that pain patients would send in about me. I was also sent emails about patients who needed my help. I never received any emails/letters such as these since becoming a Board member. Not until a disgruntled pain patient who was removed from one of my groups for being disrespectful and unkind sent the interim CEO an email. This person spelled my name incorrectly as “Susan Stuart”, she obviously does not know me and did not know me at all. I felt belittled and reprimanded by being sent the code of ethics. Especially when the issues had nothing to do with USPF and I did not use my role in any conversations with that person. I did not receive a personal phone call, nor did anyone request any information or clarification regarding the absurd complaint; after my years of loyalty to USPF. Therefore, you can read the end result in my recent letter to the Board members below:

Dear Nicole, Wendy, Ellen, (XXX & XXXX,(*2 attorneys)

When I was initially asked to join the Board of Directors of the USPF, I was pleased and excited to be joining a group that I feel is  doing wonderful things and representing the interests of the pain community.

Very quickly, (XXXXXXXXX) XXXXXXXXXXXXXXXXX However, I decided to help shoulder the burden of guiding USPF through the trauma of the aftermath of XXXXX & more. Also to stay & help with USPF losing its founder and CEO. As time went on, XXXXXXXXXXXXXX kept adding up. I decided that it was my duty to stick by Nicole  & the other Board members & our legal team, to help clean up this mess & help to guide US Pain Foundation in the right direction.

I have become increasingly frustrated because everything that was promised to me upon becoming a Board member has not happened. I was told that I could represent US pain foundation at Pain week in Las Vegas 2018. I was also told that I would be put on an advisory board and be given a program of my own to run and see through to the end. I have been told repeatedly that as a Board member I cannot officially run any programs, but others do. I feel that those things I’m most passionate about are marginalized. I feel that somehow I was inadvertently sought out & appointed to the Board, because somehow, some person(s) thought that I would just agree and not ever express my own voice and opinions. But I do have opinions and a voice. I’m sad that as a board member I don’t know who any of our donors are and I didn’t find out about the movie that’s been in production for three years, I was told? There’s so many things I don’t know but then XXXX told me that “there’s no one higher than the board”? It’s a bit confusing in all honesty. I feel “kept in the dark” about many things.

One big reason or probably the that I feel the need to resign from the board of directors of the US Pain foundation starting immediately, is due to the lack of  insurance for Board members & support group members. I don’t feel “safe” being involved with voting on big decisions yet being “left in the dark” much of the time. I don’t really know where money is going or where n it comes from in all  honesty. All the things that I used to love I’m not able to do anymore because “I am a board member“.

Last of all & sadly, I received an email today with a copy of the code of ethics from Nicole. A disgruntled pain patient from Canada, sent her note full of horrible lies & accusations. I was not consulted privately via a phone call or even given the benefit of the doubt. I have never had any trouble with not one person since I joined this or any organizations. I don’t speak or claim to speak for the USPF in any of my groups that I run. I only give facts with links to back up what I say as chronic pain patient.

For all of the above reasons and due to the fact that I don’t feel respected, I must tender my resignation from the Board of Directors  of the US Pain Foundation immediately.

Sadly,

Peace & Hope,

Suzanne B. Stewart

about.me/suzydukettes

Recipient of USPF’s Pain Ambassador of the Year Award‘16, Mentor & Social Media Assistant RSDSA, Staff Columnist/Ntl. Pain Report, Blog-“Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, patient advocate for Deaf/HoH

“Out of suffering have emerged the most massive characters are seared with scars” ~Khalil Gibran~

Thank you for taking the time to let me share with you. I feel a deep sadness and broken at this time.

Making Peace With My Pain?


*********PLEASE NOTE THAT THIS IS MY ORIGINAL ARTICLE!!! WHAT GOT POSTED IN “NTL PAIN REPORT” TODAY (9-22-18), WAS EDITED AND CHANGED INTO SOMETHING ELSE. I’M NOT A WHINER NOR AM I WEAK! I HAVE A VOICE & I’M VERY STRONG!! I SENT IN SOMETHING WRITTEN FROM MY HEART & SOUL. IT’S BEEN CHANGED INTO SOMETHING UNRECOGNIZABLE! THOSE ARE NOT MY WORDS OR THOUGHTS AT ALL. THIS IS MY ORIGINAL ARTICLE AND BELOW, YOU CAN READ MY OWN THOUGHTS AND WORDS:

Hello Luvs,

In this time of uncertainty for chronic and/or intractable pain patients please stop telling us to “make peace with our pain”. Until you have walked in my shoes, do not try to dictate what is best for my situation. If you hurt your back momentarily or you have several aches and pains, then by all means, use “mindfulness”, “accept your pain” and then “make peace with it”. I don’t care what you do with it honestly, but stop telling me/us to “make peace” with now, uncontrolled chronic daily pain at a 7/8, knowing that it’s forever. My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now.

Unless you actually live with daily intractable pain, don’t to tell me/us how to manage it. If you’re a writer, motivational speaker or a politician, stop giving advice when you don’t truly understand the nature of living with 8 chronic pain illnesses. If you have one chronic illness and “accepting the pain” or “making peace” with it works for you, then by all means, go for it!

Let me explain for those who don’t really know the person they are preaching to on social media. It’s not always Psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes things just happen that cause a very strong person to live with very high pain. When that pain gets more complicated and worsens as time goes by, and it is forever; that is when acceptance, making peace with your pain, grounding and mindfulness don’t work very well.

I was a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language. One day a man ran a red light and changed all of that for me. Afterwards, I worked very hard at 3 years in TBI rehab, 9 years of PT/OT, driver rehabilitation and speech therapy. I ended up with 2 hearing aids and prisms in my glasses for a long time. For 3 years I refused opioid medication due to the stigma or “taboo” of taking it. I did Biofeedback and the red line was “off the charts” showing that my pain was very high and I needed some other intervention. I was the woman who graduated with honors, never drank or smoked. I was not taking that medication. I worked with a pain Psychologist at a pain clinic. I had several epidural nerve blocks, trigger point injections, cortisone injections and other medications(*most either made me violently ill or I was allergic). I endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I finally accepted the fact that just as people with hearing loss need hearing aids and those with vision issues wear glasses and Diabetics take insulin; I needed to take pain medication to give me back my life, or some semblance of a life.

For 13 years, I’ve been as active as I can be. I don’t lay in my bed and wallow or feel sorry for myself. I have been a US Pain Ambassador, on the Board of Directors and even won “U.S. Pain Ambassador of the year 2016”. I’m a patient Leader for WEGO Health, have been on 3 different radio shows and I have been a mentor for newly Diagnosed CRPS patients. I have a popular blog and write for National Pain Report. I’ve done many fundraisers, awareness events and still currently lead several online groups while helping several non-profit groups with whatever they need help doing. I live with several high pain chronic illnesses, including: systemic/full body CRPS, EDS type 4/vascular, Chiari (with migraines), Right Long Thoracic Nerve Neuropathy, Autonomic Neuropathy, R.A., Dysautonomia/POTs, Coronary Spasms (Prinzmetal Angina), Degenerative Disc Disease with multiple herniate and bulging discs, Spinal Stenosis, Chronic erosive Gastritis, Gastroparesis, SIBO and multiple heart issues.

I’m at 25% of of what I was taking for the past 13 years. Two of my specialists wrote letters on my behalf, to my pain Dr.; explaining that with the multiple illnesses that I live with, the patch is and has been proven to be the very best thing that works for my pain. One of my specialist physicians wrote “why break what doesn’t need fixed? She’s been active and doing so well and this could land her inpatient and in declining health”. My pain Dr. said “this is Bullshit, his license is not any better than mine. If he wants you to have the patch then let him prescribe it”.

I continue to be quickly tapered against my will. I’m in my “Lazy Boy” recliner 16-18 hours every day.

This is what my “forever” is looking like now. I went from teaching aerobics, American Sign Language, being the Elementary schools’, Jump Rope Team coach and an active mother and then grandmother, to “living” in a recliner daily. I’m not focusing on the pain, in fact I’ve done everything to not focus on it. I went through 43 hours of labor and then a C-section, twice; while being sent home with Motrin 800 per my own choice. I’m not a “baby”, nor am I an “addict”. In fact I have a letter from the Pain Psychologist, stating that I “do not have an addictive personality”. So stop telling me to plant my feet (with open sores on them, by the way) into the earth to practice “grounding”. Don’t tell me to “make peace with my pain” or accept it; unless or until you have walked one full day in my shoes! If you haven’t experienced pain on these levels, then stop preaching to the choir. I, for one am getting very tired of defending myself and the rest of the pain community on the subject of opioid pain medication therapy. It does work for some of us just as Insulin helps the Diabetic to continue living.

**The Article Ed edited & changed totally & which appeared to be written by an illiterate 5th grader. Is in its entirety at the Ntl pain Report but for your convenience I’ve recopied what Ed Coghlan wrote in place of what I had sent to him:

Making Peace With Pain (by: Ed Coghlan)

Please stop telling me to make peace with my pain.

I can’t right now and haven’t been able to do for many years.

And it’s getting worse.

My health decline has continued year after year with increasing medical issues piled on top of the old injuries; going on 16 years now. If you have daily intractable pain, you know what I’m talking about.

It is not always psychological, hysterical or a history of abuse that causes ongoing pain. Sometimes you just hurt—a lot.

I was once a very active single mom with two young daughters. I had a career as an Interpreter for the Deaf at a major University hospital and school districts. I taught aerobics and was the jump rope team’s coach at the Elementary school. I visited different schools to share Deaf culture and American sign language.

Then a man ran a red light and changed my life. I have endured 8+ surgeries, including 2 screws and a pacemaker with a cardio messenger box next to my bed. They told me to “trust them” and take the opioid pain medication or I was going to stay in that hospital bed in my home. I said ok

For 13 years, I’ve been as active as I can be. I have been active with a national pain advocacy group and I contribute to the National Pain Report and have worked to advance the wants and desires of the millions of people like me—people who suffer from this cruel condition.

This “reduction” in opioid prescribing has hit me hard. I’m taking  about 25% of what I was taking for the past thirteen years. Specialists who treat me have written letters to my pain doctor explaining that with the multiple illnesses I live with, the patch is the best thing for me. My pain doctor, feeling the pressure of the CDC guideline, refused to do it.

Now I’m in a “Lazy Boy” recliner 16 hours a day because I’m being tapered against my will.

Not what I want. Not what I’ve been.

I could tell you much more, but if you’re like me, you know.

It’s not fair.

Suzanne Stewart is a chronic pain patient (and advocate) who lives in Michigan. She is a contributor to the National Pain Report.

***Lastly,

This Bio which is usually on all of my NPR articles, is missing today….. here’s what it normally says:

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. The statements and opinions that she provides are her own and should not be taken as the stance, position or viewpoint of the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com

This was my photo + Bio on them”staff columnists” Page under the “Our Team” Tab.

This is the email I rec’d from Ed Coghlan, after I was trying to let him know how upset I was that he “gutted” my (this) article. He added words that I hadn’t written. He changed the powerful message that was in my original story; to one of weakness and whining! Needless to say, I don’t want to write for someone that would call this an “edit”. Then send me an email at 12:05 AM, saying that he was going to publish this article in the morning (6 hours later); without ever allowing me to see the “edits”! I finally asked if I could please see the final copy and about 1:00-1:30 AM, I received the skeleton of my former original article. I begged him not to post it as it was. He’d gone to bed and scheduled it to post at 6:00 am! I was getting all kinds of comments from persons who recognize my writing when they see it and when they don’t! The rest is history!

PS- Btw, he couldn’t get hold of me on Saturday because I have recently been quickly tapered against my will; from my LA/ER pain medication that I’d been taking since 2005. I was in horrible pain from the added emotional strain from my resignation from US Pain Foundation Board of Directors & from USPF. Then the very next day this happened.

My husband called Ed in my place because I’m conscientious and would never just not respond. He told my husband that “he was not comfortable talking with him”! Well he’s also my caregiver and I wasn’t able to speak at that point. It all came tumbling down!

Pain, Politics, Suboxone & Bupenorphrine


Please watch this informational video about the a patient removed from the only medication that helped lower pain. Also, much information regarding the dangers of Suboxone /Bupenorphrine.

Pain, politics & Suboxone/Bupenorphrine

All You Ever Wanted to Know About S.I.B.O.


S.I.B.O – Small Intestine Bacterial Overgrowth (A Chronic small intestine infection)

1) Definition and description of the disorder: (*This is from the info that the Dr’s office gave to me): Simply put, Small Intestine Bacterial Overgrowth is a chronic bacterial infection of the small intestine. The infection is of bacteria that normally live in the Gastrointestinal tract but have abnormally overgrown in a location not meant for so many bacteria.

2) What people are saying?: I posted an article on National pain report here:

http://nationalpainreport.com/sibo-the-missing-piece-of-chronic-pain-dysautonomia-8832039.html

**Most people have been saying that they have had problems like this for up to 20 years but had no idea what it was. They took my article to their Dr and their Dr’s did not know what it was for most. But some who went to specialist GI Dr’s, got the Breath test done and then they were diagnosed and helped. There are many comments following this article, of other things people are saying about “SIBO”. Also, people have gone months, years or decades before ever getting a proper diagnosis. It is known from what little research exists, that tress, trauma, autoimmune illnesses and more, can contribute to the symptoms of SIBO.

3). Symptoms: gas/expel flatus, within Small Intestine. The gas causes abdominal bloating, abdominal pain, constipation, diarrhea or both (similar to symptoms of IBS). Excess gas can also cause belching and flatulence. Also symptoms include painful and bloated abdomen

(*looking and feeling like a 3-5 most pregnancy), nausea, vomiting, diarrhea, malnutrition, weight loss, joint pain, fatigue and chronic fatigue.

4). Possible co-morbidities: People with SIBO normally have illnesses such as Dysautonomia and/or Autoimmune illnesses. This is information given to me at the Dr.’s office. But on the website listed below, on weebly.com, it is noted that There are many conditions associated with SIBO including: diabetes, scleroderma, Crohn’s disease, and others. There is a striking similarity between the symptoms of irritable bowel syndrome(IBS) and SIBO. It has been theorized that SIBO may be responsible for the symptoms of at least some people diagnosed with irritable bowel syndrome. Autoimmune nerve damage to the small intestine is frequently a cause of SIBO.

5) Treatment Options: The treatment for SIBO is a 7-10 day course of antibiotics. They do treat the infection and so the symptoms disappear for awhile. The problems lie in that the disease that causes SIBO can’t be corrected at times. The symptoms return frequently, once the antibiotics are stopped. Some patients need to be treated with antibiotics repeatedly or even continuously. Some readily available probiotics used are: VSL#3 or FLORA-Q, but their effectiveness has not been proven. Also, Bifidobacterium infants 35624 is the only probiotic that has actually proven helpful in treating symptoms of IBS and SIBO.

6). FDA Approved medications: the approved medication for SIBO is antibiotic therapy. Also, a dietary supplement called “Allign” is often given in conjunction with the antibiotics. It is a probiotic which can help alleviate some of the bacterial overgrowth.

7) Complimentary Therapies: Allign is an OTC probiotic, that does alleviate some of the symptoms and some of the bacteria. Also, eating probiotic yogurts daily, will help cut down the occurrences of SIBO. Meditation and Guided imagery have been helpful in relieving some of the stress in the body and gut.

8) Best Nutrition: The best nutrition is to make sure that you eat yogurt and any other dietary items with probiotics in them.

*FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) are found in certain foods that are commonly poorly absorbed and fermented in people with IBS and SIBO, so restricting them can be very helpful. *there is a resource below that will help you with this and explain more about FODMAPs.

9) Best exercise regime: This can be difficult because what they have found is that exercise in any rigorous manner can actually worsen the symptoms of SIBO. But a healthy diet and walking 30 minutes daily for most of the days of the week, do help the symptoms of SIBO.

10) Local Support Groups: Right now there are only 4 support groups in the USA. They are NYC SIBO Support group, SIBO Support Group Los Angeles and the Portland, OR SIBO support group. There are several online support groups on Yahoo groups and on Facebook. The most well known for being a “good” support group, according to the article in #4 below in “informational resources”, is here: https://www.facebook.com/groups/470628319710443/

11) Links to other organizations and websites and additional info:

A) https://sibocenter.com/2016/02/resources/

B) http://www.Siboinfo.com

C) https://cemoodle.nunm.edu/

12) Personal Story for Someone to Connect with: I have had GI problems for many years and after 2002, when I was in a “catastrophic” motor vehicle accident, they increased. I had tried about 4 different GI Dr’s, but none of them could figure out what was wrong with me exactly.

They kept telling me it was “IBS”, but I knew it was something much more and different from that. IBS is enough to deal with and a horrible problem, but I was having even more serious issues. I finally found a wonderful GI Dr in Michigan. He did some tests that the others had not done. One of the tests was called a “Hydrogen Breath test” and the other was a digestive test for Gastroparesis. It turns out that I have both the SIBO and the Gastroparesis, along with Chronic Erosive Gastritis. I felt bloated and looked a few months pregnant and was having a lower abdomen burning sensation. Now I take monthly antibiotics, or pretty much monthly. I have to rotate with 3 different kinds of Antibiotics because they don’t work well if you become immune to the same one often. I stuck it out and did not give up until I found a Dr. Who would actually listen to me and not dismiss my issues, because I have so many and because I’m a “complicated case. Now I try to eat a probiotic yogurt daily and I cannot take the “Allign” due to a heart problem called “Long QT syndrome”, as it interferes with that. But I do have to take the antibiotics and I have found some relief with online and Facebook support groups for general pain issues and now one for SIBO too. I have listed everything for you above or below. I wrote an article that I have posted above for you, in the National Pain Report last year. When people commented, I was amazed at how many people had the same symptoms and no relief. Many people told me that they printed out the article and took it to their GI or PC Dr’s, and they were tested with the simple Breath test. They have also found some relief and for that I am extremely happy. If you have any questions, please don’t hesitate to ask?

13). Graphics:

A). There are some YouTube videos here:

1: Youtube video: On SIBO from Gastroenterologists : (Digestive disease week 2012)

2: Youtube video: Info about Gut Bacteria & SIBO

INFORMATIONAL RESOURCES:

1) Information on SIBO

2) also from a handout from GI Dr’s office in MI, called “Overview-SIBO-Small Intestine Bacterial Overgrowth” (the handout was found at: EE Website : Brochure about SIBO

3) IBS & SIBO INFO

4) Start a SIBO Support Group

5) Small Intestine Bacterial Overgrowth, the case of the perpetual patient : The case of the perpetual patient

Pain Warriors- The Movie


Hello Luvs,

I want you to really take a look at this post, please? I want you to “meet”, Tina Petrova. She is a fellow pain Warrior and a colleague of mine. She is not only a friend; but a friend/colleague in advocacy and awareness of chronic pain and people who live with chronic pain illnesses.

Honestly, Tina Petrova is an award winning film maker, a motivational speaker & chronic pain activist. This movie is about the real deal, chronic pain and everything that goes along with it! This movie has got to catch the attention of legislators and others who do not yet understand what it’s like to live with daily, unrelenting chronic pain.

“Pain Warriors- The Movie”, WILL catch the attention of anyone watching. But especially those who need to change the way they think regarding intractable pain and invisible disabilities. We need your help to donate and /or spread this crowd funding campaign. Please help to get more people involved in supporting this awesome film. The crowdfunding campaign will go through mid-September 2018.

Here’s the link to the Seed & spark crowdfunding campaign for “Pain Warriors- The Movie”!

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Link to the Trailer: Pain Warriors- The Movie

*Pain Warriors – The Movie

Needs Your Help! Please Help Support This Beautiful Project!

Inclusion Statement

Our story brings to light a deadly suppression of facts & figures. Chronic Pain does not discriminate against age, sex, or race; suicides in all groups due to under managed pain are on the rise. We are, all of us, only one car accident or one surgery away – from a life of chronic pain.

About The Project

PAIN WARRIORS ~ sets out to examine the invisible crisis of Chronic Pain in North America, and its devastating toll on society. Without proper and timely education of the masses this growing concern can and will reach a tipping point, beyond which there is no return.

Society’s lack of public information regarding Chronic Pain, has sadly forced this disease and its sufferers underground.

Not only are many denied adequate treatment , they are often looked upon by society as a whole as outcasts. We are , all of us, only one cancer or one car accident away from a life of chronic pain. As we age the numbers of chronic pain patients will only grow exponentially.

We intend to bring to light a deadly suppression of facts and figures. Without education and awareness, there can be no reform.

Compelling interviews showcase a broad cross section of pain patients, their loved ones and the doctors that treat them across North America. We share intimate, courageous and heart breaking 1st hand stories from pain patients in the trenches- the ongoing political and social issues they face and how they struggle to cope , just to get through another day.

Pain Warriors- The Movie

In recent months, several American pain specialists have been targeted by the DEA and currently face loss of license and potential incarceration, for attempting to uphold their Hipprocratic Oath and serve the U.S. pain population. The lines between “pill mills” and  legitimate doctors have become blurred and in many cases, unrecognizable to the general public and society at large.

In recent decades groups including breast cancer and aids patients have banded together formally with runs marches, rallies –  telling their stories in the press.

Doing so has garnered more ambitious and imaginative solutions to treatment and health care reform. The best hope for pain patients,  is to become more vocal and active in their own pain management.

The needed response to pain, it would appear, is to encourage patients to stand up and speak up.

PAIN WARRIORS  plans to do just that – give voice to the voiceless.  #givepainavoice  #painwarriors

Pain Warriors ~ the Movie has posted an update!

Pain Warriors shines a spotlight on Pediatric Pain ~

11 Yr. old Hunter,  battles courageously with a Chronic Pain condition, using Superheroe comic book characters – to inspire him to get up and fight yet another day. Pediatric pain is one of those growing pain conditions that is under- discussed and under- represented in the media.

Our new film Pain Warriors – seeks to identify and shine a spotlight on marginalized peoples and groups that have fallen through the cracks of both appropriate and timely healthcare and , societal compassion as a whole. In the pain community, we use the term” a slow death of compassion…” to denote societies overall shunning of chronic pain as a legitimate disease that steals lives, breaks hearts and destroys the very fabric of family life. There has been a deadly suppression of facts and figures for far too long. Pain Warriors  the movie ~ dives fearlessly into the muddy trenches,  where chronic pain patients & pain doctors who face a hostile regulatory environment live in apprehension, fear and suffering-  of what is to come next… live in fear and suffering.

Visit Pain Warriors ~ the Movie

All You Ever Wanted To Dysautonomia


Definition:

  1. Dysautonomia refers to a malfunction or disorder of the Autonomic Nervous System (ANS). This is usually involves failure of the sympathetic or parasympathetic nervous system; but it can also mean that the ANS may be overactive. Dysautonomia refers to the “involuntary” systems of the body. This can include: body temperature, blood pressure, respiratory/breathing, sleep, heart rate and more. Dysautonomia can be considered “Local” as it is in many cases of CRPS, or it can be a total Autonomic failure. Sometimes Dysautonomia is considered to be “acute” and reversible. Other times it may be chronic and progressive (as in Diabetes or Parkinson’s). A person may be diagnosed with Dysautonomia by itself, as a condition. It can also be associated with degenerative and neurological diseases. Dyauatonomia is actually an “Umbrella term” used to describe many different issues that occur due to the malfunction of the Autonomic Nervous System.Lastly, Dysautonomia is responsible for our “fight-or- flight” response. This is what gets our body ready for stressful situations. When the nerves of the ANS are damaged, you can get Autonomic Neuropathy as well. These dysfunctions can range from mild to life threatening.
  2. What People Are Saying: people are saying that Dysautonomia is a common ailment among people with autoimmune illnesses, CRPS, Chiari, Ehler’s Danlos Syndrome (EDS) and even Diabetes. The most common symptoms that people in the chronic pain community speak about is a fall in blood pressure during standing or “Orthostatic Hypertension” or a rapid pulse rate. Other things that are said about Dysautonomia are that it causes abnormal sweating, emotional instability and motor incoordination.
  3. Symptoms: Some symptoms of Dysautonomia *(aka Autonomic nerve disorders) are: syncope (fainting), Orthostatic Hypotension and/or intolerance, POTS (Postural Orthostatic Tachycardia Syndrome), Gastroparesis, Intestinal Dysmotility, constipation, Erectile daysfunction and neurogenic bladder. Other symptoms include: fatigue, light-headedness, weakness and cognitive impairment. In Dysautonomia involving the Gastrointestinal tract, the patients often feels nausea, bloating, vomiting and abdominal pain, when the ANS malfunctions.
  4. Possible comorbidities: Possible illnesses that go along with Dysautonomia can include: CRPS, EDS, Chiari, Gastroparesis, Autoimmune illnesses, Lupus, POTS, NCS (Neurocardiogenic Syncope). Other co-morbidities include: Multiple Sclerosis, RA (Rheumatoid Arthritis), Celiac Disease, Autonomic Neuropathy & Sjogren’s Syndrome etc. The worst form of Dysautonomia, which is a fatal form that occurs in adults ages 40 and up, is called MSA. This means, “Multiple System Atrophy”. It is similar to Parkin-son’s disease but MSA patients become fully bedridden wishing 2 years of diagnosis. But please note that this is very, very rare and only about 350,000 people have the MSA form, worldwide.
  5. Treatment options: There is no cure currently for Dysautonomia at this time but secondary forms can improve with treatments for the underlying disease. You can help the Orthostatic hypotension by elevating the head of the bed, rapid water infusion (given rapidly in an IV) and eating a higher salt diet. Other treatments may include exercise and healthy diet.
  6. FDA approved medications: Midodrine is an FDA approved medication that helps with the syncope and collapse.
  1. Complimentary Therapies: Biofeedback and exercise with the right amount of salt may help some of the symptoms of Dysautonomia. Biofeedback can teach you how to calm yourself of anxiety which often comes with this illness. There was a Webinar back in early Winter 2017, that US Pain hosted. It was about “Earthing” or “Grounding (”http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F and this therapy has been known to help this person; who wrote her experiences about “Grounding” helping her symptoms of Dysautonomia. *I was also prescribed a “cooling vest” to help with the feeling of overheating inside of my body
  2. Best nutrition: higher salt intake and staying hydrated are the two most important things to remember with Dysautonomia and nutrition.
  3. Best exercise regime: Exercise can be difficult when you feel very fatigued and barely able to stand at times. Also, you need to get the permission of your Physicians before starting any exercise program. Also, staying hydrated while increasing aerobic exercise, lower extremity strengthening, increasing fluid/salt intake and psychophysiologic training for management of pain and anxiety, along with family education. People also say that exercise intolerance is part of Dysautonomia but it is essential to helping with it. Start off slowly and avoid exercises that cause orthostatic stress. This includes minimal or no vertical movement, including rowing, recumbent biking or swimming.
  1. . Local Support groups: Local support groups can be found at the website: “Dysautonomia International”, here: Dysautonomia International and you may email Dysautonomia International at: info@dysautonomia for online support group resources. They do not verify the accuracy of information posted in the groups*.
  2. . Links to other organizations and websites and additional info: The best website with a lot of information here: ( Dysautonomia International ) at “Dysautonomia International”. They have links to support groups and online support, as well as diet and exercise tips.
  3. : Personal story for someone to connect with: Dysautonomia is something that I was likely born with. I was involved and injured in two automobile accidents that have inevitably made it much worse. First in 1983, I was hit by a drunk driver while sitting at a red stop light. Secondly, in 2002, a man in a pickup truck, ran through a red light and I suffered multiple injuries and had many surgeries. I also suffered an MTBI or “MildTraumatic Brain Injury”. One of my treatment team of Dr.’s is a Neurocardiologist, and he told me that my Dysautonomia was made much worse due to the “sloshing” of my cerebellum against the skull wall. I do have severe systemic CRPS, Chiari, RA, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (aka EDS type 4/vascular) and Gastroparesis. These are all hallmarks of the umbrella illness of Dysautonomia. Following the auto accident in 2002, I was fainting quite often. We found out that my brain was not telling my heart what to do, because I have Autonomic Nervous System Failure. I ended up requiring a dual changer pacemaker. It now does 87% of the work for my heart. I am very lucky to have found a wonderful specialist in Dr. Blair Grubb, MD at the University of Toledo Medical Center. He is known around the world as far away as the UK!

**Various other personal stories for me are found here at my blog “Tears of Truth” and at: tearsoftruth.com:

A). Dysautonomia/POTS & S.I.B.O. and this one: Article about Dysautonomia/POTS & SIBO

B). Another article for you!Https://Wordpress.com/post/tearsoftruth.com/9263

Helpful YouTube Videos:

A. Dysautonomia/POTS

B.Dr Blair Grubb on POTs

***Informational Sources:

1. Dictionary.com on Dysautonomia

2. Medical News Today in Dysautonomia

3. Dysautonomia International

4. http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F

5. Dysautonomia International more on Dysautonomia

6. Mayo Clinic on Dysautonomia

7. Healthline.com on Dysautonomia

8. Clevland Clinic on Dysautonomia

9.WordPress blog “Tears of Truth” on Dysautonomias